I spoke to someone today who has had Fibro be a part of her life for over 20 years.  She was looking at my website, and came across the page that offers support for the people who surround us, help us, and are there for us.  This apparantly made her very upset, and from my perception angry. 

I welcome all opinions, everyone has one, and respect all opinions, don't always agree with them, but try to see where that person is coming from (not always successful, but try), and will listen and learn from others point of view.

I have come across a few people who have had the same point of view and want to now address it, as any discussion can bring awareness to Fibromyalgia, and maybe help you see things from a different point of view, whether you agree or not.

Those who are diagnosed with Fibro, go through pure hell.  The pain, depression, change of lifestyle, feelings of no longer in control, on a daily basis brings out a person that we would not normally become.  Some of the qualities are amazing, the strength you find within yourself, the new appreciation for simple events, but with good comes bad.  The mood swings, snapping at people around us, finding it harder to be compassionate for those who are around us.

But are we the only ones Living With Fibro?

Our family members, spouses, and friends, also have a loss, a new life that they have to deal with.  They no longer have a loved one who is social, smiling, outgoing, healthy, active, and the person who they have known.  They now have to watch us become a shell of what we were (until we get better), can no longer hug us, deal with the mood swings, us snapping at them, and the most difficult watching us in pain and feeling helpless.  Just like our lives have changed, so has theirs.

The person I spoke to today, had a few simple rebuttles, some understandable to me, and some not. 

The people who surround us should just be happy that they are not the ones that were diagnosed with Fibro.

If we start putting attention on them, it will take attention off the people who are diagnosed. (will address this lower)

If they love us, they should be happy to help.

Let me address these first, as there is one more point, that I had a bit of trouble with, honestly.

Our supporters are probably very lucky to not be the one who wakes up daily with the pain, cant sleep because the pain, and cannot do because of the pain.  However, they do wake up everyday with a loved one in pain, they do wake up everyday with a feeling of helplessness and have to watch someone they love go through this.  How does it feel to watch your mother, father, husband, wife, child, best friend, go through something that affects them to the core and not be able to do anything to relieve it?  How is it to take care of someone on a constant basis and feel like you have done so little, and your life is now focused on them, that you have given up a part of yourself?  To have feelings, thoughts, and actions that you cannot express out of fear of hurting that person.  Wouldn't a place to express yourself, discuss with people who are in the same position with you, and a place to just go ahhh, its okay to think and feel this way do a world of good not only for them, but for you.  Please do not get me wrong, these wonderfully strong, caring, patient people who are around us do not regret helping, being there for us.  For the most part, that is where they want to be, and the feelings they have do not negate their actions or the compassion and love where the actions come from.  They just need a place to express and let the feelings go.

The last point I received was this;

Fibro was compared to Cancer, which I have done myself and have heard on many occassions.  In this conversation, it was explained to me that Cancer is a very known disease, that is well funded, advocated for, and affects so many people and yet you do not see support groups for the families, friends, and spouses.

First I am going to strongly disagree with this statement.  There are support groups for people who have lost someone to Cancer, or has someone who is fighting Cancer.  I do not know where they all are, but I do know where my local one is and should you need one by you please contact me and I will research it for you. 

Whether it is MS, Cancer, Diabetes, no matter what the syndrome, disease there should be a support group for everyone, especially for the Supporters.  Why?  The education, a place for them to learn, vent, express themselves, will bring nothing but benefits to both sides.  A person who will understand what you are going through, a person who may be able to be more patient, and calm as their frustration, anger has been released elsewhere. 

The last point, or opinion I have is this, any attention to Fibro whether it is for the person who was diagnosed, or the people around us, it is good attention.  Any attention to Fibromyalgia will bring more research, funding to find a cause,  and most importantly awareness and education for all those involved with Fibromyalgia.

Very simply, whether you were diagnosed, or supporting those diagnosed, we are all LIVING WITH FIBROMYALGIA.
 


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